Japanese law impedes a U.S. family’s plan to donate newborn’s organs should she die

Sept. 24, 2016

Updated 12:03 p.m.

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Lynsey and Fabian Gosin visit daughter Zephaniah at the hospital in Okinawa, Japan. Zephy suffered irreversible brain damage at birth. Her parents, while hoping for a miracle, would like to donate her organs if she dies. (Photo courtesy of the Gosin family)

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Lawrene Bottorf of Dana Point views her granddaughter, Zephaniah Gosin, who was born in August in Okinawa, Japan, with severe brain damage. While praying for a miracle to save Zephy, her family knows she may not live, and hopes to donate her organs if she dies. (Nick Agro, Orange County Register/SCNG)

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Zephaniah “Zephy” Gosin has remained in neonatal intensive care since her birth in Okinawa, Japan. While she has suffered irreversible brain damage, her parents are holding out hope for a miracle while also looking at donating her organs if she doesn't survive. She would need to be flown to the U.S. on life support since neonatal organ transplants are extremely rare in Japan. (Photo courtesy of the Gosin family)

Lynsey and Fabian Gosin visit daughter Zephaniah at the hospital in Okinawa, Japan. Zephy suffered irreversible brain damage at birth. Her parents, while hoping for a miracle, would like to donate her organs if she dies. (Photo courtesy of the Gosin family)

Named after a prophet in the Old Testament, Zephaniah, which means “the Lord is my secret,” was born without sound, movement or breath.

All her dad, an Orange County native who served in the Air Force, can remember is this: “She was gray, like a raincloud.”

Doctors at the hospital in Okinawa, Japan, where Gosin lives with his wife, Lynsey, put Zephy on a table. She was born with the umbilical cord wrapped twice around her neck. She wasn’t breathing.

They frantically pumped her chest and whisked her away in an ambulance to another hospital. For 24 days, that’s where she has remained, on life support.

Doctors said Zephy had suffered hypoxic ischemic encephalopathy, which means her brain has been permanently and irreversibly damaged because she didn’t have enough oxygen to breathe. But her brain is still hanging by a thread, sending out feeble waves. Zephy hasn’t been declared brain dead – not yet.

Fabian Gosin says he and his wife are doing what parents in their position might do.

“We are hoping for the best and preparing for the worst,” he said.

The best-case scenario for these devout Christians, who have made Okinawa their home, is a miracle. If the worst happens, they would like her fully functioning, potentially life-saving organs to go to other children who desperately need them.

But, as it stands, that might not be possible unless Zephy is on American soil, because neonatal organ transplants very rarely are done in Japan. The family is trying to raise $100,000 so they can fly the infant on life support to the U.S.

A longstanding law in Japan prevented harvesting organs from children under 6. A revised organ transplant law, which took effect in 2010, allows organs to be taken from anyone regardless of age with family consent. But tougher, brain-death criteria are applied to children under 6.

So far, since this law passed, there have been just three cases in which organs have been taken for transplant from brain-dead children under 6. The first case, in June 2012, involved a boy who was declared brain dead at Toyama University Hospital.

What is Zephy’s mission? Is it to play a part in saving other lives? Her parents think so. They’ve been contacting organ transplant agencies, doctors, hospitals and even the U.S. Consulate to examine their options.

Since their daughter’s birth, they’ve also led a strange existence. The couple were married in 2010, and Zephy is their first child. The crib they bought and decorated for her is bare. They drive one hour each way every day to the hospital to see her. And yet, they can barely see her face because she is hooked to breathing and feeding tubes.

Lynsey pumps breast milk every day and drops off the bottles at the hospital, where they are fed to Zephy through a tube.

“I still do it because it’s hard for me to stop providing for my baby,” Lynsey said, choking up.

Fabian says Zephy seems like his baby, just one he can’t play with or hold.

“She’s super cute,” he says. “But all we see is spontaneous twitching, nothing more. I don’t know how much more brain dead she can get. It breaks my heart to see her.”

In Japan, babies like Zephy are transferred from the neonatal intensive care unit to what is known as a “chronic hospital.” There Zephy would be on life support until she is pronounced brain dead.

“That is not what we want for our baby,” Fabian said.

In Japan, the death of the brain often is viewed differently than it is in the U.S., where personhood and individuality are more likely to be seen as being locatedin the brain.

“Here, we can think of a loved one as gone even if their heart is beating,” said Angela Jenks, assistant teaching professor of anthropology at UC Irvine. “For many people in Japan, a person isn’t only located in their brain, and death of the brain doesn’t automatically mean the death of a person.”

In Japan, death is often recorded twice – when brain death is confirmed and when the heart stops beating, Jenks said.

For many in Japan, mistrust of the medical system was worsened by what is known as the “Wada case” in 1968, when Dr. Wada Jiro performed one of the earliest heart transplants from a donor he had declared to be brain dead.

However, investigations suggested that the recipient did not actually need a transplant and that there was no evidence the donor had been brain dead. Wada was charged with homicide and negligence.

Even though the charges were later dropped, the case had a huge influence on laws about brain death and organ transplants in Japan.

“In Japan, the brain-dead are often thought of as patients with human rights, not dead bodies,” Jenks said.

“Concerns about possible abuse of those who are brain dead extend even more to children, who are particularly vulnerable.”

But, like Fabian Gosin, his mother, Lawrene Bottorf, believes her granddaughter was born with a mission.

“If the Lord chooses to heal her, that would be miraculous,” said Bottorf, a Dana Point resident. “But, it does seem to us that her mission is to sustain life in other babies. She has a damaged brain but healthy organs. And there are so many children who are waiting for healthy organs.”

If Zephy were to be flown stateside to facilitate organ transplants, that could be unprecedented, said UCLA pediatric neurologist Dr. Alan Shewmon.

“This is just the opposite of some of the recent high-profile cases in the U.S. where families have gone to court to force hospitals to continue life support for their child who was declared brain dead,” he said.

If a young child diagnosed as brain dead is given life support indefinitely, it is likely that she would remain permanently comatose, unless the brain-death diagnosis was incorrect, Shewmon said.

These children are also likely to have a shortened life span, dying quickly of complications such as an overwhelming infection, he said.

There always is a risk of damage to organs while transporting any patient requiring life support, Shewmon said.

“But there is no reason to be concerned that the trip, per se, would damage organs,” he said.

As the Gosins ponder the eventual demise of their child, over the last few days they also have been taken by surprise. On Thursday, Zephy began to breathe on her own.

She didn’t need any tubes, for the first time.

But the Gosins say they don’t know what to make of these signs that seem like improvements despite the fact that her brain remains severely damaged. They continue to raise money and as of Friday had a little more than $26,000.

“For most parents, these improvements would be a source of delight,” Fabian Gosin said.

“But, for us, it just adds a bit of confusion. She has autonomous reflexes because her body is alive. It means she’s not completely brain dead, just severely brain dead.”

They already knew that, he said.

“This week’s events did bring us temporary joy,” Gosin said. “But not much more hope that we already have that God needs to do a complete miracle for Zephy.”

They’ve been approached by a family in California that needs a kidney for their son who has the same blood type as Zephy. But this week’s events makes it more difficult for Zephy to qualify as a donor, Gosin said.

“Our situation stays the same,” he said. “We still don’t know what to do.”

Hope remains a precious commodity as something else happened on their most recent hospital visit.

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